My husband has early-onset dementia, and I am staying home with him. We have no children, and our closest family member is about four hours away. No local friends, because my husband was working all the time after we moved here until incapacitated by this disease.
I thought I had things under control until I wound up in the emergency room with heart problems. Suddenly not only was my life flashing before my eyes, but also my husband's life. Fortunately--this time--he was able to sit and wait quietly in a waiting room while I was having emergency tests done, and they let him stay with me in the hospital at night. But it made me wonder: what happens if he has reached the stage of wandering off or being very agitated when I am not available? Also, if we get to the point where he can't make a telephone call or go to a neighbor's house to ask for help, what would happen to him if I did not wake up some morning? I have come to the very painful conclusion that when he is not able to safely be in the house by himself, I will not be able to keep him at home any more. For several years now, ever since his diagnosis, all my thoughts were of when he wouldn't be with me any longer. Thinking about what could happen to him if I died suddenly and nobody knew was a shocking change of perspective, but something I guess I should have been thinking about all along. We have family members who would--eventually--arrive to take over my husband's care, but first they would need to know that something happened. The thought of my husband alone in the house for several days with my dead body was just about too horrible to contemplate.
I know that a lot of caregivers are living somewhat somewhat isolated lives because of the limitations caused by this disease. Has anybody else thought about this topic? Any ideas to share?
I think your instincts are on target. Without someone to pick up the slack for you, I can think of no other good option than looking into assisted living with an AD unit available for whenever that seems appropriate. He may very well reach a point, soon, where such a living situation is as acceptable to him as home, and you will have the ability to spend as much time there as you want to.
I don't think you have posted before. Welcome to my website.
Yes, I definitely agree with Emily. You should consider an Assisted Living facility for the both of you. The staff would be aware of the situation, and able to step in right away if something happened to you.
Hi Jan K , I have thought of this often. Luckily for us, we are in an apartment building with several friends in the building. I think they would notice something wrong long before our sons did. Our one son lives in the building right next door so for the time being, we are very lucky. It is certainly an enormous worry for all of us.
I came to the same realization when I fell, had a concussion, and was hospitalized for 2 days. Who would take over? Fortunately I have family & friends, but who could step into the 24/7 caregiving role. I then checked out care facilities in case they were needed and agreed w/our son on one. If you have no one in your close circle, you might consider what my 86 y.o. sister does. At 10 each morning a 'phone-pal' phones her to see if everything is OK. I know such groups exist all over and at least it would be a connection and if no one answered, there would be help ASAP. Good lluck and take care of yourself. Easier said than done, I know.
Please do not fell you need to place your husband as soon as he no longer can make a phone call for help or go to a neighbor. My husband has not been able to do that for over 4 years, just think how long he would have to be in a NH enviroment if you did that. Most likely he would not awaken to find you no longer breathing or anything else that bad, and even if he did, the results would not be as bad for him in that respect as would be many un-necessary years in a facility. Don't worry about the things that may never happen, you have enough on your plate with what is already happening. My husband also has early onset and is in the late 6th stage of the disease. I have health issues and I also have worried about the same thing happening but not to the point that I would place him just in case.
Jan, would it be possible to set up some sort of phone support service with your family or friends? Maybe just a short call made at a certain time each day to let them know that things are okay.....I can understand how you feel.....My husband is totally bedridden and if something happened to me would certainly be in a pickle, but our two grown children are in contact with me every day just to say Hi or to make plans for the day. Just a thought.....
Besides the obvious details of actual care, there are some legal issues as well.
Our daughters live 4 hours or more from us, and their concern is just what you outline, so we found a good lawyer specializing in elder law to set our world in proper legal shape. That included guardianship of my wife. As long as I am here, I as her husband, can do fine, but should I go before her, there is a world of unknowns.
Get the legals done, get them done right and gain a tiny degree of peace, there isn't a whole lot of it in this business.
My husband has MCI and is fully functioniong 99% of the time. That 1% keeps me always vigilant as when his impairment kicks in, he needs looking after. I recently had a short hospital stay - someone came and checked him every night while I was in the hospital - mostly to be sure that the exterior doors where shut. I had been sick in bed for over a day and he never checked on me actively. He said he would walk by and see that I was "sleeping" and left me alone. My daughter finally called 911 - she lives 2 hours away - after he told her what was going on. She is a nurse and is very concerned for us. I have ADT security service for my home.
I called them, they have a Companion Service Program. It is a receiver - a white plastic box that hooks to the phone line. It has a 300ft radius. Both my husband and I wear a medallion around our necks that has a button to push if we need help. If we are within "sound" range, they come on that little box when we push the button and ask what help we need. If they can't hear us, they call 911. They told us to get a key safe with a combination on it so that the rescue people could get inside. ADT has the code to the box with the key.
It cost $40 to install the Compainion Systen and $24 a month for monitoring and no contract. I know this wouldn't help in all situations, but for us right now, it is a big feeling of security. Hope this info helps someone. Hope&Faith